A Woman's Journey With Rare Disease

Let me just say I don’t consider Shrug to be a legit news source or Radar Online, who they quote.

I’m using this article to prove a larger point about how the media treats & views disabilities & illness in America.

Also, I’m putting aside the fact that I’m a journalism graduate. I may be overtly picky about how features are structured & written. I also take issue with how news is reported in general, because I went to journalism school to find out how to do this well. Even though it rattles me, I get angry because I love & respect the field. I want to see it do better – by everyone.

That said, I’m also disabled. Have been a long time. This is not something I am ashamed of. It is not a flaw or a weakness. It did take me awhile to get comfortable with this part of my identity in many aspects of my life. That’s why I can highly relate to one of Autistic Hoya’s posts on internalized ableism.

I think my illnesses being invisible for so long periodically really led to some harmful inner dialogue & programming against myself at times that I really didn’t fit anywhere (so I felt).

I know this is not true.

With the help of many friends, past & present, (both with disabilities & those without) I am able to identify as disabled without pain or shame.

Now that my limitations have become more apparent, I can so clearly relate to things that used to piss my friend (& mentor) Jonathan off.

He was a staunch advocate & taught me many things before I even knew any terms like inspiration porn or ableism & what they were.

He was subjected to such things on daily basis but had such a wit & flare with dealing with them that his friends learned to a degree to advocate by osmosis simply by watching him deal with different situations.

This was before the age of such things going viral or being written up or reported online in any form.

Celebrity or not, Michael J. Fox is a human being. He deserves dignity & respect. He deserves to be allowed to deal with his Parkinson’s Disease progression without it being sensationalized & him being dehumanized in the process.

EVERYONE deserves that regardless of status, regardless of illness. The way this is written it is trying to fear monger his illness & paint him into some kind of grotesque caricature to be ashamed of & feared.

This is no more evident than in this quote:

“At 54-years-old, Fox’s speech is slurred and his left foot is so unresponsive that he’s often forced to drag it behind him. He is expected to become wheelchair dependent before the age of 60.”

There are 10 million other ways that this could be written.

Instead, it overly sensationalizes the progression of his illness by hyper-focusing on his symptoms & exaggerating them to the point where they paint him as some kind of monster.

Furthermore, I have several friends who do use wheelchairs but I hate the words dependent or bound, because for them their wheelchair keeps them active, it’s a mobility aid, essential to their independence & self -sufficiency.

Much like my oxygen functions to keep me active so I can exercise & do things I need to do on a daily basis.

Needing to use a wheelchair or some type of mobility or assistive device is not a sign of weakness or dependence. It’s certainly not something to be exploited or be demeaned for.

Still unclear what “inspiration porn” is? This quote is a good example:

“It was a struggle for him during his rare outing, but as he headed away from the restaurant he even managed to flash a peace sign to his fans from the back of the limo.”

Do we begrudge anyone, (regardless of health status) a night out amongst friends? So he’s a public figure, I get that. Yet this again sensationalizes him doing something that the average American does on a daily basis & that’s live their life.

This is no different or any less disgusting than those viral images you see of “friends” helping other “friends” to cut their food if they aren’t able to do so. This is not something to be televised or broadcast or reported like it’s news. It’s not something that makes anyone a hero or an inspiration.

When friends need help, they ask. When they ask, true friends reciprocate because they want to & it’s no big deal. It’s not for what it gets them, & it’s certainly not for fame or notoriety or a bit of viral attention.

I also question friends who would say something like this:

According to Radar Online, a close friend said of the night out, “It was heartbreaking. Michael’s bravery knows no bounds. But as the disease takes its toll on his body, even he is beginning to see that his battle is a losing one.”

Yes, lets just be sure we let Michael J. Fox know he is to be pitied for fighting back against Parkinson’s. Let us cloak this fake “friendship” & “support” in shaming him for not being able to “win”. Because I’m sure most people in the entertainment industry know what a fight with Parkinson’s is like on a daily basis without living it themselves.

Since his body is betraying him, let’s make sure we suck what little is left of his dignity, privacy, & respect for him as human being too.

Let’s make sure we make it clear we think he’s a loser since he doesn’t have a magic wand & clearly doesn’t have enough money to buy a cure for himself. I mean this is someone who went to the future, after all. Surely he has all the answers, because he’s been to the future. Certainly he can fix this.

We all know what I wrote is tongue-in-cheek, ridiculous, untrue, & unattainable – yet this is the dialogue that this quote is clearly putting forth as fact & reality albeit thinly veiled.

No human being, celebrity or not, deserves this.

Yet, this is often how many disabilities & illnesses are perceived, reported, & portrayed in today’s media.

If you want to see balanced & accurate reporting of disability in today’s media, I can suggest becoming familiar with David M. Perry‘s body of work.

He’s an excellent writer & his blog is an engaging read.

He’s published pieces in the Atlantic, The Nation, & several other media outlets on often underreported subjects.

I learn so much from him on how great reporting should be done. He’s well worth a follow.

I’d ask you to take one of his stories & size it up on how it’s reported elsewhere. You’ll see & appreciate the difference.

I also highly recommend seeing what Dominick Evans & Maysoon Zaid are doing on a daily basis to raise awareness in television, film, & advocacy in general.

In the interim, please respect Michael J. Fox as a person & resist reposting such garbage as a show of support for him.

He’s actually one of the few celebrities out there that has continually used his celebrity & influence to help people throughout his career. The least we can do to help him is by not exploiting what he’s living with.

This makes me sad. For a few reasons. Everything you said, and because many people with chronic illness see these things as ok, they see themselves as wheelchair bound, it scares them to think of it.
One treatment that may help me, might put me in a wheelchair. Most doctors won’t even consider doing it. I keep thinking, a wheelchair would give me more independence than I have now. (well right now I’m going through a good spell, but for over 2 years if being in a wheelchair would have helped, I would have jumped at it.)
It saddens me that so many with disabilities see themselves as suffering, bound, less than….

Sadly, such is the state of “journalism” today. I watched the movie “Spotlight” yesterday and that story was probably one of the last true pieces of journalism to be written in a long time. They WORKED the story, unlike today when virtually every piece is an OP-ED hit piece on some group or person, that is filled with rumor or innuendo. It sickens me!